Quality of Medical Advice Provided Between Members of a Web-Based Message Board for Patients With Implantable Defibrillators: Mixed-Methods Study.

Christopher E Knoepke,Lucas N Marzec,M Pilar Ingle,D Hogan Slack,Daniel D Matlock

doi:10.2196/11358

Abstract

BackgroundPatients use Web-based medical information to understand medical conditions and treatments. A number of efforts have been made to understand the quality of professionally created content; however, none have described the quality of advice being provided between anonymous members of Web-based message boards.ObjectiveThe objective of this study was to characterize the quality of medical information provided between members of an anonymous internet message board addressing treatment with an implantable cardioverter-defibrillator (ICD).MethodsWe quantitatively analyzed 2 years of discussions using a mixed inductive-deductive framework, first, for instances in which members provided medical advice and, then, for the quality of the advice.ResultsWe identified 82 instances of medical advice within 127 discussions. Advice covered 6 topical areas: (1) Device information, (2) Programming, (3) Cardiovascular disease, (4) Lead management, (5) Activity restriction, and (6) Management of other conditions. Across all advice, 50% (41/82) was deemed generally appropriate, 24% (20/82) inappropriate for most patients, 6% (5/82) controversial, and 20% (16/82) without sufficient context. Proportions of quality categories varied between topical areas. We have included representative examples.ConclusionsThe quality of advice shared between anonymous members of a message board regarding ICDs varied considerably according to topical area and the specificity of advice. This report provides a model to describe the quality of the available Web-based patient-generated material.

Highlights

The vast majority of adults use the internet to research health issues to inform decisions, including whether or not to accept certain tests, medications, or devices[1,2]
We utilized a mixed inductive-deductive approach for characterizing and quantifying the quality of medical information shared on an implantable cardioverter-defibrillator (ICD) message board
If your heart has stopped and an ICD was implanted to restart your heart, turning it off could have fatal consequences. [Controversial]. This analysis of the quality of medical information exchanged between members of an ICD-specific Web-based message board provides unique insight into the quality and accuracy of the advice patients will find on such websites

Summary

Introduction

The vast majority of adults use the internet to research health issues to inform decisions, including whether or not to accept certain tests, medications, or devices[1,2]. Web-based medical information fills a critical need for patient education, decision making, and emotional support [4,5]. Patients use Web-based medical information to understand medical conditions and treatments. A number of efforts have been made to understand the quality of professionally created content; none have described the quality of advice being provided between anonymous members of Web-based message boards. Objective: The objective of this study was to characterize the quality of medical information provided between members of an anonymous internet message board addressing treatment with an implantable cardioverter-defibrillator (ICD). Conclusions: The quality of advice shared between anonymous members of a message board regarding ICDs varied considerably according to topical area and the specificity of advice. This report provides a model to describe the quality of the available Web-based patient-generated material

Objectives

Methods

Results

Conclusion